A.S. Face 0358: Karen McDowell

I was diagnosed with AS after my last daughter was born in 1995, I was 28 years old. She was born with Down Syndrome and it was a shock. Which has turned into a blessing. Right after her birth, I was diagnosed with Hashimato’s Disease and shortly after that I woke one morning with my thumbs killing me. They felt as if I had been out in a snow storm and was in a warm house thawing out. I had always had some lower back pain, figured it was due to the “curve in my back” my mother always told me I had. She also had this ” curve”.  They felt the upset of our daughter with her diagnosis and NICU stay for the first week and then another in the first month triggered it all into action.

I went to a rheumatologist  found I was HLA B27 positive and diagnosed with AS. Tried various NSAID meds, all made me have chronic diarrhea or felt just out of it. Lodine worked for a while then gave me the worst intestinal pain. I gave up on the docs, took alfalfa and ibuprofen . Also, have fibro. Took Effexor for a while and it helped with all of it until weight gain. So, over all these years it has been Advil mostly if needed.

Moved to Virginia four years ago, decided to see a doctor here and was told I did not have AS, after all these years I would have fusing. Heard he was a quack, after the fact. Went to another doc, told me the same thing. Made me angry due to the fact woman progress differently than men and all cases are different.

I recently went back to try this again with a third doc her in Virginia, she says it is AS and I have been very lucky that there is no fusing. My SI joints are getting really bad. I have aortic insuff. uvuitis, and mostly all other possible symptoms. I am now getting bad hip issues and now the neck MRI shows a mess going on, have pain in every joint now. Hate meds, not thinking I am doing the biologic at all. Too scary. I have a special needs child to think of, can not imagine taking a med that will possibly give me cancer and or TB. Which is the worst of two evils, the AS or the meds that may give me something worse and or kill me? I will end this now, but I do know my food allergies and sensitivities really do affect the way I feel. Since my hysterectomy three years ago and being on bioidentical hormone replacement if they get out of whack, I am in severe pain and achy all over. Foods an hormones play a huge role in my joint pain.

Virgina United States of America


9 Responses to “A.S. Face 0358: Karen McDowell”

  1. Hi- I live in northern VA… where are you in VA? I am in the same boat with the meds, don’t want to try biologics but no nsaids either. How did you find out about your aortic insufficiency? I always have heart symptoms but they just think it’s nothing but “extra heartbeats” because I’m young.. my email is kristinanderson22@gmail.com if you want!

  2. Have you tried visiting a functional medicine doctor for food sensitivity testing? Dr. Alessio Fasano, one of the top celiac/gluten researchers in the world, just wrote a paper in one of the medical journals about leaky gut and autoimmune diseases. He even talks about spondylitis! He says that leaky gut tends to show up in AS patients BEFORE the disease starts, and that their relatives tend to have leaky guts as well.

    http://www.celiaccenter.org/documents/publications/Leaky%20gut%20and%20autoimmune%20diseases,%20Clinical%20Reviews%20in%20Allergy%20&%20Immunology,%20November%202011.pdf

    I don’t know if this would help you or not. But if you want to try without medication, try this: http://tedxtalks.ted.com/video/TEDxIowaCity-Dr-Terry-Wahls-Min

    I wish you all the best and that you are able to stay healthy/feel better to take care of your daughter!

    • Thank you, I have food sensitivities for sure. I have been to an allergy doc, and told my other docs. But, comes down to if it bothers you don’t eat it. Thanks for your reply.

  3. Karen, the lawyers make em scare you with the possible “nasty” side effects. Well, that might be a bit of an overstatement (MY lawyer is reading over my shoulder), but I don’t think you should be afraid of the biologicals (my brother is afraid of the same things-so he won’t take it). I don’t know how many patients per thousand get TB (good question), but I’ll bet it’s close to lightning. The last thing you want to do is “wonder what if I would have tried it”.

    • I have went 17 years without it, and do not feel that way about other things that I did not try. I just can not wrap my head around a drug that can give you cancer. I have seen family members with cancer and why increase my odds of dying with cancer because I took a drug. The only thing I have seen is that people down the road a few years quit it, or have to switch to another one. In the end they are off them all and back where they started, and then what permanent damage have they done to themselves in the long run? Everyone is different, I can’t see taking the risk.

  4. Dear Karen,
    Thank you for sharing your story with us. I understand your concern over the medicines especially have a special needs child. I wish you the best.
    Sincerely Cookie

  5. Here is a site about some issues with meds, FDA is involved. http://www.healthy.net/scr/article.aspx?Id=2850 I hate anything new, like it all to be worked out before I try it years down the road. Hate to see things happen to people like test rats, for me to see it and say….no way.

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